National
2021-22 National In-Person Survey Report: Access
2021-22 National In-Person Survey Report: Choice And Decision-making
2021-22 National In-Person Survey Report: Community Inclusion and Belonging
2021-22 National In-Person Survey Report: Community Participation
2021-22 National In-Person Survey Report: Demographics
2021-22 National In-Person Survey Report: Employment
2021-22 National In-Person Survey Report: Health
2021-22 National In-Person Survey Report: Medication
2021-22 National In-Person Survey Report: Relationships
2021-22 National In-Person Survey Report: Rights and Respect
2021-22 National In-Person Survey Report: Safety
2021-22 National In-Person Survey Report: Satisfaction
2021-22 National In-Person Survey Report: Self-Direction
2021-22 National In-Person Survey Report: Service Coordination
2021-22 National In-Person Survey Report: Wellness
2021-22 National In-Person Survey Report: Workforce
The 2021-22 National In-Person Survey Report is available here. For national reports prior to 2021-22, please visit the Report Library.
State
The 2021-22 State In-Person Survey Reports are available below. For state reports prior to 2021-22, please visit the Report Library.
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National
The 2021-22 National Family Survey Reports are available.
State Reports
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NCI State of the Workforce, IDD
(Formerly called the ‘Staff Stability Survey’)
The annual NCI State of the Workforce for IDD (NCI-IDD SoTW) collects comprehensive data on the Direct Support Professional (DSP) workforce providing direct supports to adults (age 18 and over) with intellectual and developmental disabilities (IDD).
The goal of the survey and the resulting data is to help state developmental disabilities systems (DD systems) examine workforce challenges, identify areas for further investigation, benchmark their workforce data, measure improvements made through policy or programmatic changes, and compare their state data to those of other states and the NCI-IDD average.
For data on the workforce supporting the aging and physical disabilities population, click here.
State of the Workforce in 2022 Survey Report
State of the Workforce in 2022 Survey Report INFOGRAPHIC
Cover art by Sidney Perry
Learn more about Perry’s work at https://gatewayarts.org/artists/sidney-perry/
State of the Workforce in 2021 Survey Report
State of the Workforce in 2021 Survey Report INFOGRAPHIC
For reports from other survey years, check out the Report Library.
A total of 26 states plus the District of Columbia administered the 2020 NCI-IDD State of the Workforce Survey/ Staff Stability Survey. All told, 2,987 provider agencies are included in this report.
2020 NCI-IDD Staff Stability Survey Report
2020 NCI-IDD Staff Stability Survey Report – COVID-19 SUPPLEMENT
2020 NCI-IDD Staff Stability Survey Report INFOGRAPHIC
For reports from other survey years, check out the Report Library.
Data for Action
Last updated: October 12th, 2022
How person-centered practices are related to better outcomes for people with intellectual and developmental disabilities: The critical role of case managers
Person-centered practices (PCP) are considered a best practice for developing person-centered service plans. However, there is not enough research on how PCP impact outcomes for service users. National Core Indicators-Intellectual and Developmental Disabilities (NCI-IDD) analyzed data from over 22,000 adults with intellectual and developmental disabilities (I/DD) using state-funded services who responded to the 2018-19 NCI-IDD In-Person Survey. We used multi-level regression to look at user experience with PCP & outcomes.
Key takeaways include (can we add something here about “when controlling for other factors….”:
–People who choose the services they get as part of their service plan have more choice about life decisions (21% higher Life Decisions scale scores)
–People who can contact their case manager when they want to are more satisfied with their community inclusion (27% higher Satisfaction with Community Inclusion scale)
–People who say their case manager asks them what is important to them are more likely to say that services help person to have a good life (3.6 times higher odds)
–People who say their service plan includes what is important to them are more likely to describe their health as very good or excellent (1.5 times higher odds)
–Person-centered practices among Case Managers have a relatively small relationship with the Everyday Choices scale. This may be due, at least in part, to the fact that ability to make everyday decisions is more influenced by the paid staff who support people than by the Case Managers and service plans.
These results provide strong evidence that experiencing person-centered planning and practices is consistently associated with better outcomes. Participating in developing service plans was positively associated with all five outcomes. Meaningful person-centered planning is a resource intensive effort, and this research has implications for training and assessment of person-centered practices in case management, as well as monitoring appropriate case load size for case managers.
If you have any questions or feedback on the resources, please reach out to ldubois@hsri.org
Using NCI-IDD and NCI-AD Data to Assess Progress with Person-Centered Requirements in the CMS Settings Rule A Hypothetical Case Study
This joint NCI and NCAPPS data brief presents a hypothetical case study of how states can use National Core Indicator (NCI) data (NCI-IDD and NCI-AD) to look at system-level person-centered planning and practices and get an idea of statewide system alignment with the HCBS Settings Rule.
What Do NCI-IDD Data Tell Us About the Proportion of Family Care Givers Who Are Being Paid to Provide Support?
According to the results of the 2021-2022 Adult Family Survey (AFS), about 1 in 2 respondents to the AFS reported they or someone else in the family was paid by the IDD agency to provide services to their family member. Caregiving can result in added stress for the caregiver, loss of income, and reduced health and quality of life. During the pandemic, these stresses increased. Paying family caregivers recognizes the key role they play in supporting their family member.
What Do NCI-IDD Data Tell Us About How Many People with IDD Receiving State Services Are Enrolled in College or University?
- Without the advantage of education and training beyond high school, the ability of people with IDD to escape poverty and find employment is diminished.
- Though the numbers of people who were enrolled in post-secondary education in the NCI IPS for 2020-2021 was very small, the availability of these opportunities is growing.
- According to the results 2020-2021 In-Person Survey (IPS), only slightly more than 3.2% of respondents with intellectual and developmental disabilities (IDD) aged 18-25 were enrolled in a college or university.
What NCI-IDD Data Tells Us About Vacations
- The benefits of vacation are abundant and well-documented, especially for those with IDD, whose social networks and opportunities are often more limited as a result of the enforced uniformity of their daily lives.
- Vacations add to our quality of life and expand our horizons.
- In 2021, while just 44% of the general population vacationed, only one in four people with IDD reported taking a break – a number that ranged by state from 6% to 39%.
What NCI Data Tells Us About the Impact of COVID-19 on Families Who Have a Family Member with IDD Living at Home
COVID-19 is continuing to disrupt the lives of families around the country but poses particular challenges to families who have a child or adult with IDD living at home. Check out this data highlight NCI-IDD Adult Family Survey data from the COVID Supplement implemented in 2020-21. These data demonstrate the impact of COVD-19 on families who have a family member receiving state DD services and living at home.
NCI team members recently published the article “Effects of person-centred planning and practices on the health and well-being of adults with intellectual and developmental disabilities: a multilevel analysis of linked administrative and survey data.” in the Journal of Intellectual Disability Research. (https://onlinelibrary.wiley.com/doi/10.1111/jir.13015)
Here is an infographic illustrating the major findings of the paper.
Here below is a plain-language summary of what the article found!
Background
Person-centered practices (PCP) are considered a best practice for developing person-centered service plans. PCP in service planning are driven by service users’:
- Individual preferences
- Needs
- Priorities
US policies require state systems to adopt PCP. These policies apply to any home and community-based service setting. However, there is not enough research on how PCP impact outcomes for service users. This study aims to address this gap. This will be done by studying the relationship between PCP and outcomes for adults with intellectual and developmental disabilities (I/DD) who use state-funded services.
Methods
Data for this study comes from the 2018-19 National Core Indicators® In-Person Survey (NCI). The NCI links survey responses with state records. This study includes a sample of 22,000 adults with I/DD getting services from 37 states. We used multi-level regression to look at user experience with PCP & outcomes.
We studied 5 outcome measures:
- Choice and control over life decisions
- Everyday choices
- Satisfaction with community inclusion
- Self-reported health
- Whether a person feels their services are helping them to have a good life
We studied 4 measures of PCP:
- Does your case manager/service coordinator ask what you want?
- Are you able to contact your case manager/service coordinator when you want to?
- Were you able to choose the services that you get as part of your service plan?
- Does your service plan include things that are important to you?
Results and Future Directions
There is a strong relationship between better outcomes and the PCP measures. In particular, participating in developing service plans was positively associated with all five outcomes.
This study adds to the evidence of PCP as a best practice. This study also shows the value of linking survey data and state records to have a better picture of person-centered practices. Some of the call to action of this study are for stronger policy and training for PCP in state DD systems. This should include paid support staff as well as case managers.
National Core Indicators®-IDD Family Surveys COVID-19 Supplement National Report Special Edition
In response to the COVID-19 pandemic, NCI-IDD added a state-optional COVID-19 Supplement to all NCI Surveys. The COVID-19 Supplement is intended to support the understanding of the experience of people with disabilities and their families at the beginning of the COVID-19 pandemic, and their interactions with services during that time. Data were collected between July 1, 2020 and June 30, 2021. This Special Edition Report shows individual state and overall national outcomes for the NCI-IDD COVID-19 Supplement questions.
These reports, designed together with self-advocates, highlight topic-specific data in an accessible, easy-to-read format.
2020-21 National In-Person Survey User Friendly Report: Case Management and Staff
2020-21 National In-Person Survey User Friendly Report: Choice and Satisfaction
2020-21 National In-Person Survey User Friendly Report: Employment
2020-21 National In-Person Survey User Friendly Report: Health Access
2020-21 National In-Person Survey User Friendly Report: Rights, Privacy and Safety
2020-21 National In-Person Survey User Friendly Report: Service Plan
2020-21 National In-Person Survey User Friendly Report: Using Internet, Cell Phone, or Smart Phone
2020-21 National In-Person Survey User Friendly Report: Wellness
2020-21 National In-Person Survey User Friendly Report: Community Participation
2020-21 National Adult Family User Friendly Report: Access and Delivery
2020-21 National Adult Family User Friendly Report: Case Management and Support Staff
2020-21 National Adult Family User Friendly Report: Community Participation
2020-21 National Adult Family User Friendly Report: Crisis and Reporting
2020-21 National Adult Family User Friendly Report: Information and Planning
2020-21 National Family/Guardian User Friendly Report: Access and Delivery of Services and Supports
2020-21 National Family/Guardian User Friendly Report: Case Management and Support Staff
2020-21 National Family/Guardian User Friendly Report: Community Participation
2020-21 National Family/Guardian User Friendly Report: Crisis and Reporting
2020-21 National Family/Guardian User Friendly Report: Information and Planning
2020-21 National Child Family Survey User Friendly Report: Access and Delivery
2020-21 National Child Family Survey User Friendly Report: Case Management and Support Staff
2020-21 National Child Family Survey User Friendly Report: Community Participation
2020-21 National Child Family Survey User Friendly Report: Crisis and Reporting
2020-21 National Child Family Survey User Friendly Report: Information and Planning